Stream of Consciousness: An Experiment

I’m having a hell of a time right now. I have things I want to process and write down but I can’t figure out the words for it. This happens every time I write so this isn’t unexpected – this is the “difficulty with concept formation” part of my brain damage. Typically, I slog my way through this murky process until I have something that meets my standard. Today, however, the wheels are spinning like mad but I can’t get get any traction. So I’m just gonna write stuff down, edit sparingly, and see what happens.

I was gonna title this piece Me: A Case Study because I just finished reading “An Anthropologist on Mars” by the late Oliver Sacks, a great neurologist and professor described as the Poet Laureate of Medicine. This collection of stories shares the lives of his patients living with autism, Asperger’s Syndrome, Tourette’s and other neurological conditions. The title is a phrase used by Temple Grandin, a professor and consultant living with autism, on how she feels observing the general public around her.

I like reading about other people who also have atypical brains. It makes me feel, I don’t know, like I’m part of a clan. Maybe a neurologically impaired tribe isn’t the best one to be a member of – we’re all here involuntarily and we can’t really leave – but reading about my teammates helps me understand me.

At the same time, identifying as part of the neurologically impaired group doesn’t come quickly or easily. It’s like my self-image, my projection of myself to myself hasn’t updated. It’s still running on me circa 2000, listening to Dave Matthews Band and wearing cargo shorts (I kept DMB, lost the shorts). Maybe it’s because the whole goal of my recovery has been to recover that guy from back then. I liked that guy, I thought he was cool. Maybe it’s not even that guy, specifically, maybe I just want to be not-brain-damaged. Maybe it’s just plain old regular unleaded denial.

If this carefully constructed denial was two litres of Diet Coke, Sacks’ book was like dropping a pack of Mentos in it. I tend to read really fast. Some sections, however, just stopped me in my tracks and I had to pause to process the implications of what I just read. Sacks’ report of one patient’s struggle with memory was a near perfect description of my experience and evidence of damage to both temporal lobes. As I alluded to in a previous post, my borderline impulsive need to make puns and jokes is characteristic of frontal lobe damage.

I know some people will want to say, “Jay, you’ve always been jokey and funny, come on…” This bothers me, it takes an oppositional position to what I’m saying, as though I am wrong about this. Yes, I’m a funny dude and pretty much always have been, but there is something else there too – a feeling that wasn’t there before, a sort of urgency – in other words, a compulsion. It’s not a major one, and it doesn’t lead to inappropriate behaviour, but there is something different now and it’s been different for a while.

For an head injury that’s nearly seventeen years old,  the confirmation I encountered in this book took me by surprise. I think what’s happened is that I understand my current state differently. I think I used to consider just the PTSD aspect of my journey and glossed over the brain-damage par of it. I viewed my cognitive deficits in the most general terms, attributed to a general cause, the car accident. I know I have brain damage but I can fool most people most of the time, primarily myself. With the specific examples Sacks offers in his book, I am seeing my injuries, my current state, in more specific terms. Instead of this general diagnosis, I can identify specific injuries. My temporal lobes have been pretty significantly damaged, my frontal lobes, perhaps a little less so. 

I don’t know, it’s weird to think about. Sometimes I wish there was a clear photo, or chart, or some other gauge to measure how badly things are up there. Lately, there’s been a lot of talk about football players and chronic traumatic encephalitis (CTE). A quick Google search will bring up images of shrivelled brains, the result of multiple concussions (read: head injuries) and I wonder what mine looks like. I wish there was some type of PET scan, or MRI, or anything so I could see the parts of my brain that aren’t working properly and why. I think that maybe if I had a clear comparison, between my brain and a typical healthy brain, maybe I wouldn’t put as much pressure on myself to be a certain way; to do this more, or do that less. If I could show this side-by-side to people, maybe I would feel more understood.

Maybe. Maybe not.

In two months it’ll be seventeen years since the car accident – seventeen years of brain damage and neuroplasticity; of reorganizing, rewiring, and recovering. Strange how doing something for that long can still feel so foreign. 

To conclude this writing experiment, I will say I feel better having gotten some thoughts out onto screen. I was researching what a particular recurring dream could mean and one of the interpretations was that I was feeling restrained, that I wanted to speak but couldn’t. Maybe I’ll stop have that dream now. Then again, another interpretation was that good things are coming and I have lots to look forward to. Maybe they’re both right. Whatever, dreams are weird.

 

.

Posted in Uncategorized | 3 Comments

Unlearned Helplessness

Fifty years ago, American psychologist Martin Seligman developed a theory that would become foundational in many aspects of psychology. Building on previous observations, Seligman (with another psychologist, Steven Maier) tested how rats responded to a negative stimulus (an electrical shock) under three different conditions. The first group could escape the shocks by pressing a lever. The second group had a lever but it didn’t do anything. The third group also had a functioning lever but received no shock. After some time, the rats were individually relocated to an environment matching that of the first group, where the negative stimulus could be escaped by pressing a lever.

The first group, as expected, were quick to act by pressing the lever to escape the shock. The third group, the group that had a functioning lever yet never received a shock, also learned they could escape the shock by pressing the lever. The second group, however, made no attempt to press the lever at all, and just tolerated the negative stimulus. Their previous experience, with the non-functioning lever, taught them that nothing could be done to escape the shock. Faced with a similar situation, this time along with a viable solution, their response was to default to previous experience. Seligman called this phenomenon learned helplessness.

Another example involves elephants. I didn’t know this, but when a trainer begins working with a baby elephant, they tie the elephant’s foot to a secure post. The young elephant will try to escape for some time, straining against the length of rope. Inevitably they settle down, however, accepting that they are held to a certain area. As it grows, the elephant is strong enough to easily snap the rope or post, but it doesn’t even try. Previous experience has taught it that nothing can be done to escape the rope – and it stays put.

If brain damage can be described as anything, calling it a negative stimulus is a generously euphemistic place to start. Living with brain damage is not unlike being one of the rats in the second group – it is an inescapable reality. Looking back on the early years post-accident, I recognize that much of my time and energy was spent grasping for a lever I could press that would free me. I was the baby elephant back then, straining against the limitations of my freshly damaged brain, and I quickly learned that I was confined to a very limited space. And it’s not just the cognitive deficits that are limiting, chronic physical ailments are equally confining. Ongoing neck issues are a concern when being seated (or lying on Emergency Room stretchers) for extended periods. Problems with visual-search and acuity increases the workload of locating things, maintaining focus, and even reading. These are all inescapable and, like my cohorts in the second group of rats, I’ve resigned myself to this reality. Is this learned helplessness or learned pragmatism?

The challenge when faced with what seems to be inescapable difficulty, as simple as it sounds, is to keep trying to make the best of it. Keep trying to move the needle even a little, to tune things a little closer to something more manageable. It’s not the result that’s important, it’s the effort. This distinction was brought to my attention by a friend some time ago. I was venting about the skin cancer diagnosis I had just received, lamenting the fact that everything I tried to do to enhance my way of life was either physically unsustainable or cut short by some fresh trauma. “Things just don’t seem to work out for very long.” I concluded. “Yeah,” my friend responded, “but you keep trying.” Where I saw repeated failure, he saw resilience. Instead of depressing outcomes, he saw optimistic hope for better results. Ironically, his perspective was a more natural fit with my general disposition, so I went with it.

Acting on this perspective, I guess, puts me in a fourth group of rats – those with a non-functioning lever, and keep pushing it anyway. This group, I assume, would do much better in the experiment than the second group. Instead of lying down and ignoring the potential solution within reach, we would rush over and try the lever because, who knows? Maybe it’ll work this time. Despite all previous experience that told us it was pointless, we’d give it whirl because we have to at least try to change our current reality. If we rally one more time, maybe we can get the break we’re looking for.

The truth is I’m used to things happening to me, things I have no control over and just have to accept; car accident, brain damage, spinal issues, divorce, skin cancer. I’m used to responding to things. In fact, I came to see this as something of a positive character trait; I’m able to roll with the flurry of punches that have come knocking over the years. But in the midst of taking all these hits, I never considered that maybe I could throw some punches too, that I could actually score some points. I’ve been in response mode for so long, I’ve come to accept that rolling around the ring was the best I could do. Surviving, but not thriving had become my calling card. For a certain time, for a certain while, surviving is an accomplishment in itself, to be sure. But that time is behind me, however, and that passive mindset keeps from trying levers that could change my reality.

And so it is with this resolution that I went about trying to get a job at Royal Jubilee Hospital. I always thought that once I had a goal clearly defined, like working at RJH, for example, that the path toward that goal would crystallize just as clearly. In reality, I had no idea how to go about getting a job at RJH. I looked online and even applied for a patient porter job opening on their employment system. What I came to see, however, was that I couldn’t afford to just apply online, anonymously, with all the others and passively hope that my application would stand out. So I threw my first punch.

Instead of scouring job openings online, I decided I would just hang out at the hospital (and write or play with graphic design stuff). I didn’t really have any idea beyond that, but I figured I might be able to soak up something helpful just by being in that environment. I had some encouraging experiences early on so I kept going. Randomly striking up a conversation with a guy waiting for the elevator, I learned about the position of material porter which appealed to me. Over the next couple months, I nervously struck up conversations with whomever I thought might be able to help me. With each tidbit of useful information, I felt like I had landed a hard jab, slowly working my way off the ropes.

Steadily, I scored more and more points until finally I had an appointment to meet with the Head of Logistics, the one in charge of hiring for the porter positions. We had a very promising meeting, scheduled an official interview for later, and I couldn’t believe that I had actually bent my fate to my will. I was shaping my life instead of being shaped by it, and it looked like I might walk away with the title.

Life, however, is relentless and three days before my official job interview, I developed a bowel obstruction. In an ironic twist of fate, I found myself in the Emergency department of the very hospital I was interviewing for. Lying there with a nasogastric tube draining fluid from my stomach, I had the same knee-jerk response that’s been honed for years. “Classic,” I thought. “Of course another health issue messes things up. It always goes this way, why should this time be any different?” Perhaps it was the tube in my throat, or maybe it was a deeper resignation altogether, but I didn’t feel like I was rolling with the punches of life. I felt like life didn’t want this fight to be decided on points, and it was going for the KO.

By this time, however, I could see that my strategy was working. I discovered I could actually make things happen and change my fortune.  I was released from the hospital on Saturday and puked as soon as I got home. I slept most of Sunday, and had the interview on Monday. As I walked through the hospital halls, this time under my own power, I felt oddly confident. I had taken the final desperate blows life could throw, and was still standing.

Thirty minutes later I had a job offer.

With that job offer, I gained a new view of myself.  I discovered how to fight for what I wanted.

I learned I wasn’t helpless.

I unlearned helplessness.

Posted in Uncategorized | 4 Comments

Twice Disappointed

I’ve had this thought swirling around in the back alley of my mind and for a long time I was too busy and too scared  to get out and explore it. I felt I wouldn’t like what I found and that I would only be left with a bigger mess to sort through. As the saying goes, you can’t put the toothpaste back in the tube. This evasive maneuver was ineffective, however, and the resulting tension manifested in stress dreams of malfunctioning toilets and a facial twitch (being a human is weird).  In a bid to improve my sleep and have a less distracting face, I reluctantly dug a little deeper, fully expecting to be disappointed – and I was. Twice.

With this hiatus from work, I’ve been able to put time toward more fulfilling ventures like writing (the introspection is actually more helpful, but the writing makes it happen) and design projects. In addition, long forgotten odd jobs are being completed around the apartment, and errands are getting done in a (mostly) timely manner. Throw in some personal hangout time here at Royal Jubilee and I felt I had established a fine balance of productivity and self-care. I was still busy, sure, but it was a different busy, a more noble busy, I felt. But then, the other day, there was a pause. I forget what happened or didn’t happen (something about my brain not performing as hoped), but progress stopped as my brain ground to a halt. And this pissed me off. I wanted to get back on the productivity train, working on things and getting shit done. Instead, I waited for my brain’s equivalent of Windows ’95 to defrag and thought about why this upset me so much.

Like everyone else, keeping busy allows me to avoid considering uncomfortable truths about myself. Busyness and productivity have become my gauge for how far I’ve come. The more things I produce, the closer I am to being fully recovered and the further I am from being brain damaged.  As long as I am accomplishing things and getting visible results, I am still on an upward trajectory. As I described in the previous post, however, there is a mental block that I hit with ominous regularity. This is the block that needed defragging the other day. And as I sat, stalled in the middle of a project once again, I found myself considering the ugly notion that maybe this block was the end of the line. Maybe I’m not on an upward trajectory anymore. Maybe this is the plateau they talk about in books. Maybe this is as good as it gets for me.

And I found that pretty fucking disappointing. I found life pretty fucking disappointing. If the rest of my life is going to be just slight variations of this struggle, it sounds like it’ll be hell. It’s like Sisyphus in Greek mythology who was cursed with forever rolling a boulder uphill in Hades, a rather apt description of living with a head injury.  I’m trying to roll this boulder of a brain uphill, exerting my physical and cognitive energy to simply hold this position. There is no further progress to be made, just the inevitable and slow skid downhill from here on out.

That’s the uncomfortable truth I stared down. I let it percolate while I ruminated on what this meant for my bleak future. Acknowledging the shitstorm cloud instead of the silver lining for once was a surprisingly nice change of pace. In some strange way, it felt good to just be there and be disappointed, like yeah, this fucking sucks. Life had drastically oversold and underdelivered. That was the first disappointment, and I looked forward to venting and writing about it. 

Then I was like, but what about neuroplasticity? The brain’s ability to rewire and change itself has been the basis for all I’ve accomplished so far. I’ve read too many books and learned far too much to truly believe that I’ve plateaued. I know that with time and persistence, neural changes are still possible and I’ve got plenty of both. Oh fucking hell, I thought, I can’t even be disappointed for very long.

And that was my second disappointment.

Posted in Uncategorized | Leave a comment

Struggling Artist

In the previous post I briefly mentioned the neuropsychological assessments I had to take in the months after the car crash. Different tasks designed to measure specific cognitive functions would indicate how well my brain was functioning. In many tasks, like the spatial intelligence one, I scored in the 90th percentile or higher. In fact, my lowest scores were still within the average range for people without head injuries. On paper I was pretty impressive.

In the real world, however, I’m reminded of a phrase one neuropsychologist used to summarize my test results “While Mr. Brandsma shows exceptional abilities in many areas, he will likely have difficulty bringing them to bear.”

…difficulty bringing them to bear.

At the time, I intuitively understood what the phrase meant – that I struggle to make full use of the skills I theoretically still had – but I didn’t put much weight to it. I was rebuilding my life from scratch, and more concerned with fundamental things like basic functions, rehabilitation, and self-identity. Being able to do things that were fun (and/or fulfilling) didn’t really matter to me back then, but it’s starting to matter to me more now.

Since the accident, I’ve spent significant time (and money) on creative pursuits. I  got a camera and several lenses to make use of my sense of composition and colour. I got a computer and a pressure sensitive monitor/drawing tablet to explore digital design. Then I sold that stuff and got a small arsenal of woodworking tools to figure out how to build longboards (among other things). Moving to a smaller apartment, I unloaded my entire wood shop to my dad, got a laptop ,and created this blog. Sometime later, I got an easel, a mass of paints, and a quiver of brushes to hone a style of painting I had developed digitally years before. Eventually, I sold the easel and donated my paints to The Reach Gallery Museum in Abbotsford (where I had coordinated an art program in collaboration with Big Brothers Big Sisters.) Today, I still dabble in photography, graphic design, and woodwork (and writing, duh) but I’m much less invested.

Aside from writing, which is primarily for cognitive exercise and therapeutic value, I really thought I could get somewhere with my creative pursuits. I knew I was skilled and figured that if I had the rights tools – the right camera, the right computer, the right power tools, the right paints – I could do high quality work that might lead to something. What I found, however, is that even with the right tools and all the time in the world to spend on creating, I would just get stuck. It’s not a creative-block kind of stuck though, it’s more encompassing than that; a stifling combination of disability and insecurity. If I can get past the anxiety and fear of putting my work out there, I am often too cognitively drained to be productive, let alone creative. Alternatively, if I’m able to manage my sleep efficiently and set aside time to create, insecurity and apathy convince me to watch Spiderman instead. This back-and-forth tension is tiring and frustrating because I know I’m good at this stuff. I have an eye for these things, I just wish I had the brain for it. 

Part of the trouble with the brain I do have is that I simply have less brain power overall. Most of my energy is spent on work and errands so the pursuit of creativity slows to a crawl. In order to free up time and cognitive space, I’ll occasionally give myself permission to clean up next weekend, leave the laundry alone, and grab a bite to eat. Then I can sit and design or write or just think about stuff. But eventually we need groceries, and clean clothes, and gas in the car, and…and…and… so art is relegated to the back burner once again. 

I’m increasingly experiencing what it means to have difficulty bringing my abilities to bear. The once easy flow of creative concepts becoming physical products is punctuated now with stops and gaps. These gaps aren’t entirely debilitating, but they aren’t entirely negligible either. They land me right back in that sweet spot, or rather, that bitter spot of significant disability AND significant ability, the hallmark of being high-functioning.

The struggles I have now with memory, concentration, concept formation, cognitive multitasking, etc… affect all aspects of my life and I’ve learned ways to mitigate them in general ways (with smartphones and unlimited data plans, it’s a wonderful time to be brain-damaged). In most situations this downgrade doesn’t really bother me anymore – it just is what it is, whatever, I’m used to it. But these same handicaps, when they get in the way of me creating things, frustrate me to no end. The thing is, I’ve never prided myself on having an incredible memory (I mean, my memory was good, but I never went around like, “Hey, watch me memorize this…”). My identity was never centred on how easily I filled out forms or wrote papers so losing some level of ability in these areas doesn’t feel that costly.

Two identifying characteristics where it does feel costly are in my athleticism and creativity. Injury and age has dampened my level of athleticism, as it does to everyone, and I’ve been able to loosen my grip on that part of my identity. The only thing left to hang my hat on, then, is my creativity. This is why being creative is so important to me, and why my struggle to execute is so frustrating. If I can’t create the way I used to, who am I? The timing of my head injury was such that I never got to see where my creative skills could take me, I never got to fulfill my creative potential. Sure, I have done good work even with this beat-up brain; things like this blog, some graphic stuff, and several pieces I’ve built at work I am particularly proud of. On good days, these accomplishments are comforting and assuring. On bad days, and even on neutral days, these things only confirm the potential that remains, and may forever remain, untapped.

I can make a lot of things with a lot of mediums, but I still don’t know what to make of this.

 

Posted in Uncategorized | 2 Comments

Pun Control

“Why don’t you go ask your dad when they want to have Buddies?” Ms. Herman asked.

I was in third grade and there was some confusion as to when our class was going to meet with the sixth-graders for “Buddies,” a new program where younger students would go read with older students. Dad taught sixth grade at the time so it was natural for me to go down the hall and relay messages like a pint-sized human precursor to text messages.

I could hear Dad teaching as I knocked on the door. I haven’t really thought of it before, but being a teacher’s son at school felt like royalty. While other students called him “Mr Brandsma” I was just like, “Hey Dad!” and I enjoyed these surprise visits to his classroom.

“Ms. Herman wants to know when you want to do Buddies.” I could feel all eyes on me as Dad and I sorted out the logistics, but I didn’t mind. We had the schedule sorted in short order.

“Okay, so tell her we’ll do Buddies after math.” Dad decided.

“So we’ll meet up in the aftermath.” I confirmed. Dad laughed and I think a couple students laughed. This was a pretty sophisticated pun coming from a third-grader and probably too subtle for sixth-graders to catch. It was too advanced for me, even,  because that evening at home I had to ask dad what “aftermath” meant. I knew I made a great play on words, I didn’t know how great.

Evidently, wordplay has been a constant for me from a young age through to adulthood, even as I made way back from the car accident. In addition to the Recreational Therapy, Occupational Therapy, and Physical Therapy I attended at GF Strong, I’d tell staff I was going outside for some Fresh Airapy – it sounded more productive and healing that way.  Today, puns still seem to spill out before I can even finish connecting the thoughts (see what happened there?).  I remember playing a version of the game Scattergories in a psychology class a few years ago, back when I had aspirations of completing a degree. Groups had to come up with areas of psychological study for each letter in the alphabet, scoring points for each one that no other group had. 

“How about for ‘K’, did anyone get one for ‘K’?” the professor asked.

Kleptomania.” I offered. No one else had any suggestions so it looked like another point for my group.

Yup, that counts…” the professor confirmed.

“Yeah, we stole that one…” I deadpanned. Scattered laughter and groans ensued – university students are a much sharper audience than third graders. The professor, eager to engage in some verbal sparring, slo-pitched a weak rebuttal,”They say puns are the lowest form of humour…”

Without missing a beat, I swung for the fences, “They also say wit is a sign of a highly functioning brain…” The professor gave a thumbs up, unable to respond except to ask if anyone had got one for ‘L‘. For those keeping score at home, Jay – 1, Prof – 0

(Scattergories Pro-tip: if you ever need an animal for the letter ‘P‘, you’re guaranteed points with “Pterodactyl.” People overlook animals from the Cretaceous period, not to mention silent letters)

Science confirms that humour is positively related to intellect and wit. A 2016 study from the University of Windsor, Ontario found that puns, in particular, require strong interaction between the two hemispheres of the brain. The left hemisphere processes the language-related aspects of the pun, creating an expectation of meaning and intent. The right hemisphere, which plays a role in processing humour, kicks in soon after, detecting the hidden meaning and humour in the pun – it’s a full-brain exercise delivering a knockout punchline.

From studies like the one mentioned above, I assumed that the ease with which I delivered puns was a good thing, a sign of good brain health. Obviously, as someone who has sustained a severe level of brain damage, any symptom of good brain health is reassuring. An ability to throw out rapid-fire puns told me that I was not inferior, that amidst all the damage and dysfunction, there was still a part of my brain soldiering on, sharp as ever, a piece of my original self.

This continuity was especially important to me early on because it was my original self that had formed my strongest friendships. It was my original self that made Matt laugh until we cried in the university bookstore. My original self teamed up with Andy to semi-successfully longboard down the biggest hills we could find. It was my original self that trash-talked Kais’ shooting range as we played some midnight basketball across the street from the movie theatre. Conversely, this new version was like a shitty software update full of glitches – nothing worked the way it used to, simple tasks took forever to complete, and sometimes the whole system crashed for no reason. I knew people liked the original me, and I didn’t know how compatible this new version was. Puns seemed to be the only app that still worked in version 2.0 and this provided familiarity and comfort through a very uncomfortable time.

Researching articles for this post, I’ve come across an unanticipated twist in the connection between humour and brain function, one that I’m still processing. I read a couple case studies of patients with Witzelsuchtexcessive and/or inappropriate joking as a result of trauma to the brain. The first patient developed a compulsive need to make jokes after a pair of strokes. He would wake up his wife at night to tell her some new jokes or puns he had come up with, then laugh hysterically at them. To get some respite, she suggested he write the jokes down and some of them were included in the study. Personally, I didn’t find the samples very impressive. Unfortunately for me, this reaction could also be a result of Witzelsucht. Both patients in the study, despite being able to identify and understand punchlines, failed to laugh at or be amused by the jokes of others

So it appears that what I thought was an unchanged characteristic of my personality may, in fact, be a manifestation of further, more extensive brain damage. I may actually be even more brain damaged than I thought (not that I had a quantifiable amount in mind). The Witzelsucht study observed that bifrontal injury, damage to both the right and left frontal lobes, appears critical for the development of pathological (compulsive and disinhibited) humour. I’m pretty certain both my frontal lobes sustained some damage and I’ll know more once I get my patient records from Vancouver General (I’ve been meaning to do this for some time, but this blog post was higher up on the to-do list).

In any case, this leaves me in a kind of introspective limbo. Initially, this discovery was a bit of a buzz-kill. That shitty software update may have updated everything, leaving no trace of my original operating system after all. On the other hand, maybe a little compulsion from a damaged left frontal lobe isn’t that bad. Maybe a little disinhibition from a damaged right frontal lobe is a kind of good thing.

Maybe puns are my new superpower, and if so, I don’t mind.

Posted in Uncategorized | 1 Comment

Self Care Unit 2

I’m sitting here once again in Self Care Unit 2 of Royal Jubilee Hospital (since I came up with the name, I decided to add a number so it sounds more official). It’s Sunday and the unit is nearly empty. Unfortunately, the half dozen people sitting one table over are loud enough that it feels busy. I unfurl my headphones and fire up some deep house music to drown them out. I’m reminded of a roommate I had for a time at Vancouver General, a burly man visited by equally burly friends. They were enjoying themselves but their laughter, as I described then, was like dinosaurs gargling. The group here is just as guttural and emphysemic. I crank the music up and decide that if I damage my hearing, well, at least it’ll be quiet.

It’s a 50-minute walk from home to Royal Jubilee Hospital – a significant walk, sure, but less than the 65-minutes denoted by Google Maps. Beating their estimate by 15-minutes makes me feel like I’m already in great shape, and that maybe I don’t need to exercise as much as I think. Typically, I get my exercise walking to work a 3-4 times a week, and doing a simple workout there at the end of my shift. However, in a bid to care for my overall health, I’ve chosen to take a medical leave from work. Hence, I’ve decided to walk to RJH a few times a week to write or read for the next few months. The walk benefits my physical health; the processing and writing, my mental health. Additionally, I’ll be scheming and plotting a way to get my dream job here as a patient porter. I don’t know how likely that last part is, but I’ve been known to beat the odds – just like The Good Doctor.

In the previous post I discussed how the medical drama The Good Doctor helped me better grasp the shape I was in when I showed up at Vancouver General in an ambulance. The efforts to keep me alive, the complications arising during surgery, the split-second decisions made under pressure – it all feels more real having watched the staff at San Jose St. Bonaventure Hospital. In addition to this greater understanding of my past, the show also helps me with my present, in the character of Dr. Shaun Murphy himself.

To be clear, of course there are significant differences between an autistic surgeon with savant syndrome and a brain-inured maintenance guy on stress leave. Both neurological conditions are infinitely diverse from one case to the next, and comparing the two is like comparing apples and hinges.  One particularly unfortunate difference is that I don’t get to wear scrubs (scrubs, in my mind, are the cotton equivalent to Iron Man’s suit –  maybe I’ll get some for Halloween and be a superhero). Nonetheless, the similarities are also significant and have left me more than a little moist-eyed watching the show. Dr. Murphy, like myself, struggles with interpersonal communication, and has difficulty focusing in noisy environments. Similarly, while I don’t have savant-level intelligence or perfect recall as Dr. Murphy does, I do have a strong sense of art and design, and I know my way around a blog. In other words, Shaun and I are referred to as “high-functioning”, and though this label sounds positive, even encouraging, having pronounced disabilities presenting with notable talents is a difficult place to exist in.

For the past 16 1/2 years (my brain damage is old enough to drive – oh, they grow so fast) I’ve been trying to reconcile these deficits and disabilities with my remaining high functions. My early approach was to deny any changes and challenges altogether. I wanted to declare to my family and friends, “I’m not different! I’m just like other people!” It’s a classic post-trauma response, of course, but knowing this did not make me immune to it. I remember speaking with a doctor at GF Strong and saying, “I know I’d be the last person to know, but I don’t think I have any brain damage.” Despite the somber prognosis of my condition, I focused on the promising results of the many neuropsychological assessments I had at the time. Clearly I’m not disabled, I thought, my spatial intelligence is in the 98th percentile. Unsurprisingly, I deliberately ignored results that suggested difficulty in other areas.

It didn’t take long for this misplaced self analysis to buckle under the accumulating weight of evidence that things were, indeed, different. I was feeling things I’d never felt before; I was stressed, I was anxious, I was confused and angry. Eventually, I conceded that things were different but I figured that with enough time, I would heal up and be as good as old. After all, I wasn’t forgetting my keys nearly as often anymore.

In the ensuing months and years, though I still wrestled with the thought of being disabled, I began to see some benefits to being considered disabled on paper. For example, since it was officially determined that I was “significantly permanently partially cognitively impaired,” I qualified to have my student loans forgivenbonus (but still, totally not worth it). Being a PWD, (Person With Disability) I qualified for a job-training program that subsidized my wage to train as a bike mechanic at The Fort Langley Cyclery. They got full-time work for part-time cost, and I got sweet bikes on staff discount. Even so, I still didn’t consider myself “Disabled” for real. Instead, I considered myself to be “Disabled Lite” and felt a little guilty for gaming the system and reaping perks I didn’t really deserve. The fact that I didn’t qualify for certain aid programs because I wasn’t disabled enough reinforced this notion.

Today, I recognize my deficits and that certain measures need to be taken to accommodate and compensate for them. In order to make best use of my limited cognitive energy, I distill tasks to their simplest steps and streamline every detail. I develop efficient systems and insist that others adhere to these systems. I know this level of specificity is strange, somewhat uncommon, and probably annoying, but that’s the way I work and it’s important to me. I need things this way. When this isn’t acknowledged or accepted, I feel like declaring, “I’m not like other people! I’m different!”  

The truth is I don’t fall into either camp – I’m not entirely disabled but I’m not entirely abled either. I’m very different, and I’m very similar. High-functioning is a spectrum and my position on it is fluid, depending on the task, the skills required, and how much sleep I’ve had. This constant fluctuation affects not only my self-identity and self-esteem, but also the expectations I have of myself and for myself. Some days, in some ways, I’m more than able and the sky is the limit; other days, in other ways, I’m indisputably disabled and it’s only downhill from here. This is the tension of being high-functioning.

 

 

 

 

 

 

 

Posted in Uncategorized | Leave a comment

Self Care Unit

For a long time, coffee shops were my de facto office for blogging, but I’ve found an even better place. It’s quiet, the lighting is fantastic, and even the smell is pleasant. Most importantly, there is just the right amount of people passing by that I can switch easily between focused attention and deliberate distraction. The nearest free parking is a block away, and I have to relocate every hour or two as the time limit is reached, but on balance, Royal Jubilee Hospital makes a great new office.

As we all know, I’ve logged some serious hours in hospitals in my time, the most recent due to adverse reactions to the chemotherapy I was on last year. I’ll be back here in two days for a fluoroscopy to see if anything can be done to ease the discomfort in my throat (there’s a stent holding my left vocal cord in the “ON” position. It helps me speak clearly, but also causes me to cough persistently to clear my throat). A couple weeks after that I’ll be back here for a CT scan of my left wrist which I injured 6 weeks ago (we suspect a fractured scaphoid, a tiny bone at the base of the thumb). Any treatment needed for that will likely mean additional visits here. The frequency of hospital visits shows no sign of slowing and that’s just fine by me.

*****

Rox and I recently cancelled Netflix and subscribed to Crave+HBO. Watching TV is a very effective brain break, perfect for when I’m too cognitively fatigued to do anything, but not tired enough or ready to go to bed. I’m not one to really get into actual TV shows and typically spend more time watching YouTube channels of painters, woodworkers, and other creatives. That said, I am fully hooked on The Good Doctor, a medical drama centred on Dr. Shaun Murphy (played to perfection by Freddie Highmore), an autistic surgical resident with savant syndrome at San Jose St. Bonaventure Hospital. I finished binge-watching both seasons currently available yesterday so I just started over again; medical jargon has become my second language.

This show has shed light on some of what happened to me in  Vancouver General Hospital all those years ago. Watching a patient at St. Bonaventure go into cardiac arrest and a doctor massaging the heart during surgery, I get to see what my body has gone through. When the doctors have to make split-second, life and death decisions on a patient coming to the ER with multiple traumasI get a sense of the urgency with which I was attended to. I see surgeons fighting to save a kidney before removing it in order to save the patient and realize the same decisions were made when I was on the operating table

*****

As I’m writing here, I realize I need some clarification and approach a table next to me where four people in scrubs are sitting, “Sorry to interrupt, but can I ask a general surgical question?”

“Sure,” answers the oldest guy, Mike, who I learn is an instructor at the hospital.

“Which type of cardiac arrest requires manually massaging the heart, and is that scenario what’s referred to as ‘flatlining”?” My quick internet research is making me sound more educated than I am, but then again, my experience is an education of sorts.

“Well, that type of therapy is used when regular CPR techniques aren’t an option, like during surgery or if the ribs are fractured. It’s an emergency last resort.”

“So if that doesn’t work, there’s nothing to try after that.”

“Right. Why do you ask? Are you a med student?”

“No, that happened to me.”

As expected, jaws drop, and the conversation turns to a brief history of what I’ve survived. The group expresses amazement, first that the heart massage was a success, then again when I tell them I had my left kidney and spleen removed. Just as they’re getting over that, I hit them with the whole torn aorta thing and they’re levelled once more. As they slowly begin to regain composure I’m asked what caused the head injury. I tell them it was a car accident and that my C-1 vertebrae was fractured. Now I’ve really made their day. Mike, the instructor, suggests different avenues for me to share my story, either at high-schools or even with med school classes. I respond that the cognitive workload makes it cost prohibitive, but I wonder if the rewards could be greater than I anticipate.

After enjoying this bit of celebrity and once the group has left, I sit and wonder what the ER looked and sounded like when I was on the table. From my conversation with Mike, I now know that I went into an asystole cardiac arrest, and did indeed flatline for three minutes.  I find this image of a left-sided thoracotomy (the surgery performed to gain access and repair my aorta, among other things) and just stare at it, imagining the high-pitched tone of the ECG, constant for three minutes.

It’s intense.

*****

I’ve been feeling detached lately – unsettled, slightly anxious, and getting a little depressed because of it. I had this sense that I’d forgotten something important, and that I needed to pay attention to something somewhere. I feel that writing here at the hospital has helped, and I’m starting to understand why I like spending time here. In the hospital, whether it’s the MSA Hospital in Abbotsford, Vancouver General, Victoria General, Saanich Peninsula, or Royal Jubilee here in Victoria (all of which I’ve spent time at), there is a higher concentration of people who more fully appreciate what I’ve been through and the implications of it. I don’t feel as misunderstood here, and it’s comforting. Most people here are either going through something life-altering or treating someone who is. Some, like the group of scrubs I spoke with earlier, appreciate what an asystole cardiac arrest is to an extent I’m only beginning to grasp. Just now, I asked a couple women one table over if the correct phrasing is “asystolic cardiac arrest” or “an asystole cardiac arrest,” and one of them, a cardiac nurse, informed me it’s the latter. Interactions like that are why I set up here in the Diagnostic & Treatment Centre instead of the more casual Patient Care Centre atrium next door.  The hospital feels like my home away from home. The people here are my people, and spending time here is spending time with a part of myself that gets buried in the day-to-day hustle. 

*****

It’s 1:18pm now and I’ve been here since 7:00am. I’ve moved my truck three times and have 6 minutes before I need to move it again. I took this week off work to address this drifting feeling and I’m proud of myself for listening to my body/brain and deliberately working to process what I’d been experiencing. I think I have enough time to grab some Timbits downstairs, maybe hit the Subway over in the Patient Care Centre, then catch an episode of The Good Doctor before picking Rox up from work. It’s been a good day.

 

 

 

 

Posted in Uncategorized | 1 Comment